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I have just started Remicade infusions for my chronic pouchitis. . My second infusion will be on Wednesday.  So far I see a very slight improvement.  My GI doc said that it might take several infusions to see results.  Has anybody taken Remicade? If so, has it helped?  And if it helped, is it long-lasting?  

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Just an update: since my infusion on June 30 I am doing very well and enjoying the summer. I continue to take half the antibiotics dosages I had been taking before Remicade. My next infusion is August 25 and I will attempt further reduction in antibiotics after the next infusion but not before then. 

In other news my latest blood test came back good and I have passed all blood tests since starting the Methotrexate in late February.

My one year cancer surveillance treatment starts August 22 when I go back on the dreaded low iodine diet. You cannot eat much of anything on that diet but the good news is this time it will only be 10 days and not 23 days like last time. Then they will inject thyrogen into each of my butt cheeks on consecutive days and then give me a therapeutic low dose of radioactive iodine. I then will get scanned on Sept. 2 and immediately after the scan I can resume my normal diet.

The scan will obviously be looking for a distant metastasis of my thyroid cancer like in my lungs or brain or legs. Ideally they should see nothing glowing because all the thyroid cells in my body should have been slowly killed by the 157 millicuries of radioactive iodine they blasted me with last September. This time I will only get 2 or 3 millicuries. I feel pretty good and don't miss my thyroid at all. 

I am doing well on Remicade also (combined with azathioprine). Gut symptoms resolved and off antibiotics. I did have to take a week of augmentin for a cat bite recently, but not for pouchitis. I am asking for six week dosing though because my arthritis pain and stiffness are increasing by around week 5. I just finished up my induction in June.

Good luck with your thyroid CA follw up, CT! I'm sure all will go well.

Jan

I am not on antibiotics.  Cipro and Flagyl stopped being effective which is why I am on Remicade. I have had 2 infusion 2 weeks apart. Next one will be in 6 weeks.  My GI doc said that it might take several infusions to start working. Meantime I am trying to tell myself that I am marginally better, but It's not really true. However, I did not give it a good test because I went on a four-day vacation right after the second infusion which is always tough.  One day I actually had to take 23 generic Immodium in order to keep with all the activities planned. That alone is a problem.  Today I am staying home and refusing to take Immodium no matter what.   By the way, did you read that Allergan (I believe) is working on a lower cost Humira-type drug, which hopefully will inexpensive enough to make it unnecessary to use Remicade?  One can hope.

MSSHOE, I started Remicade this April, and after 2 infusions of feeling no different, Doctor pushed dose up to 10mg and I noticed a huge improvement. Sounds like You might need to adjust your dose too. 

CTBarrister- my doctor never mentioned stopping augmentin in my rotation(I too am on methotrexate) Is tinidizole part of the flagyl family? I'm allergic to flagyl, so does that not make it an option for me? 

Yes, CT, no augmentin and methotrexate. It is not just augmentin, but all of the penicillin based antibiotics (augmentin contains ampicillin). It is because the penicillins can interfere with the renal clearance of methotrexate, making the blood levels too high. 

I am on azathioprine, not methotrexate, so it is OK.

Jan

Brewbirds posted

CTBarrister- my doctor never mentioned stopping augmentin in my rotation(I too am on methotrexate) Is tinidizole part of the flagyl family? I'm allergic to flagyl, so does that not make it an option for me? 

My doctor told me absolutely do not take augmentin/amoxocillin while on Methotrexate as there is a interaction between the drugs, which Jan discussed above.  He told me I had to take it out of my rotation immediately and we substituted in tinidazole. None of the antibiotics cause me any issues with numbness.  Cipro makes me photosensitive and I will sunburn more quickly while using it.

I am actually writing this from the Remicade room at my GI's office in New Haven and I am getting infused as I write this. This is my 6th infusion and 3rd at the increased dosage of 900 mg. I seemed to be doing much better coming into this infusion than my last one when I was shaky the last 2 weeks prior to the infusion. In the last 2 weeks, I was much more stable than I was in the 2 weeks prior to my last infusion June 30.

I had my blood labs done on August 18 and the liver chemistries are very good. AST is 21, well within normal range of 10-35, and ALT is 26, well within normal range of 9-46.

The only two values out of range are Alkaline Phosphatase, which at 35 is below range of 40-115U/L, and  MCH, which at 33.5 is slightly above range of 27.0-33.0 pg.

I feel very good and am currently on the low iodine diet for 1 year thyroid cancer surveillance. This diet is a bit rough- no eggs, no dairy, no seafood or sea products, no processed foods or bakery products of any kind except unsalted matzohs- but is probably good for the pouch because I can't eat really any carbs (even whole potatoes are not allowed- they must be skinned). I get a low dose of radioactive iodine on August 31 and then scanned on Friday Sept. 2, and can resume a normal diet immediately after the scan. I plan on having a pepperoni and sausage pizza because it is very rich in iodine and will immediately replenish my iodine, but I normally don't eat pizza (although my CCFA dinner club I formed is going out for gluten free pizza for our September dinner). I really think and continue to believe that diet is very crucial in maintaining good pouch function and if I have sugar or processed carb orgies or consume large amounts, I feel it and downgrade my condition.

Also organizing my law school graduating class's 25 year reunion which has been a major consumption of my free time but also fun to re-connect with my former classmates. My energy level is good and is much needed for doing stuff like this especially since our 1991 graduating class has 225 persons on the list.

Anyway I think Remicade has continued to help and just hope to keep on going as I have been.

Last edited by CTBarrister

Thanks for your input.  I just completed my 3rd Remicade infusion.  I think it is beginning to help.  I will check in with my GI doc for a checkup as I get my infusion in an oncology infusion center. My main problem is my poor veins so last week I had a port put in so I could take my 3rd infusion without being stabbed multiple times to get a working vein.   Have fun at your reunion and continued success with your thyroid cancer treatment.  You have a lot going on.

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